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Deadline april 26 to effectively save the cfsac!

Discussion in 'Action Alerts and Advocacy' started by Sing, Apr 18, 2010.

  1. srmny

    srmny

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    I just submitted my letter to save the CFSAC.

    I am not feeling my best so I just covered the basics. I hope everyone will try to submit something even a one liner is better than nothing.

     
  2. Jerry S

    Jerry S Senior Member

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    Great job, srmny!!!

    :thumbsup:
     
  3. srmny

    srmny

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    Thank you Jerry!
     
  4. SeaShel

    SeaShel Senior Member

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    Great job everyone!

    Phantom and Jenny, I had all ready cribbed from you and sent mine off a few minutes ago. Just didn't have the mojo to get it done on my own, so very appreciative of your efforts.

    Shelley
     
  5. The Phantom

    The Phantom Member

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    Thanks

    Thanks, Dreambirdie!
     
  6. jspotila

    jspotila Senior Member

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    Great job, Sarahg! One minor correction is that Reeves is not gone from CDC, just from the CFS research program at CDC.
     
  7. The Phantom

    The Phantom Member

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    You have one more hour to submit to CFSAC

    I just hate to see Bad Science as the top thread in Advocacy. So I thought I'd bump this one. Also, compliments to sarahg and srmny on their excellent letters. :Retro smile:
     
  8. Cort

    Cort Phoenix Rising Founder

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    Left things to the last minute again! Thanks for starting this thread!

    Thanks Jenny and others for all the ideas. Great idea to compare charters- nows the time.

     
  9. oerganix

    oerganix Senior Member

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    Sent mine. I pointed out that only 3 illnesses get LESS research funding than CFS, per the NIH website: hay fever, Pick's Disease, and vulvodynia !!!

    And that malaria, with 1300 US cases per year, will get $113 million next year, while CFS is slated to get the same as last year: $5 million.
     
  10. frenchtulip

    frenchtulip Senior Member

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    I sent mine in today.
     
  11. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Fiddling While Rome Burns is Not an Effective Public Health Strategy

    Sent mine in.

     
  12. srmny

    srmny

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    Agenda

    I am feeling as though I am not wanted at the May 10th meeting! In the past, has patient participation not been encouraged at the spring meetings? Are we 2 weeks out and still no agenda is posted? Last fall I attended the meeting but it was my first. Until I joined this forum I did not know how to keep tabs on the CDC (thank you, Cort).

    I applaud everyone here - I thought all the letters were great. I hope there were more that were not posted. I also hope there is someone on the end of the line reading them. It seems suspiciously quiet at the CDC - it has all year. Am I alone or are there others who are feeling even more ignored than normal? I hardly thought that was even possible!
     
  13. Dreambirdie

    Dreambirdie work in progress

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    Wonderful! I am so happy to see these great letters being submitted.

    Hugs to all who took time to do this. :hug::hug::hug::hug::hug:
     
  14. creekfeet

    creekfeet Sockfeet

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    I feel bad about this. I meant to send a letter but I haven't been able to really absorb the background on this. I meant to read all about it and figure out what I should say, but I spend all my energy writing the last few days and am at that place again where it's a challenge to understand one short paragraph, and my hands don't want to stay up on the keyboard. Waaah!

    Is there still anything useful I can do?
     
  15. The Phantom

    The Phantom Member

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    I agree that the committee seems to be becoming less friendly to patient input, unfortunately. Perhaps they feel that they lost control of the last meeting (and were forced to actually do something--move Reeves out of the spotlight, although it's unclear if he's really out of the picture) and they don't want it to happen again. So it may actually be a sign of a small success and a reason to keep pushing. Also, given that Canada, New Zealand and Australia have restricted blood donation because of XMRV, they may be hunkered down in damage control mode. It's hard to know how much influence the new chairman has. It will be interesting to see him in action.

    They did send out a confirmation of a time to speak late this afternoon, but only after they received quite boring testimony on the topic they assigned: the Charter. They may be screening the testimony. I don't see anywhere that we're obligated to actually say what we submit.;)

    I also agree all the letters were great. Hopefully, they'll read them.

    Just noticed Creekfeet's post as I was writing. I don't think any of us should feel bad when we can't do something. There will be other opportunities. Our fight is not going to be over on May 10. Each of us has to rest when we need to and help when we can. What else can we do?
     
  16. Jerry S

    Jerry S Senior Member

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    Here's mine for the record.

    First, I would like to thank the Committee for their service. I hope these meetings can continue to provide valuable input to the CDCs CFS program. I request that the Committees charter be renewed and outgoing members be replaced in a timely fashion. I would prefer that the time allotted to each person testifying be increased to a combination ten and five minute slots. I dont think three minutes is adequate. I, also, would like to thank Dr. Wanda Jones of the Department of Health and Human Services for conducting last Octobers meeting and providing a webcast which allowed me to see the meeting on my bedside laptop. The videos from that meeting are now available on the Internet and are a valuable resource.

    I will be using the term ME/CFS to refer to the actual disease, as defined by the 2003 Canadian criteria (Caruthers, 2003), and CFS to refer to the syndrome created by the CDC that has various case definitions.

    I believe I acquired ME/CFS in October 1996. I say believe because I could not find a doctor in Chicago who could come up with a diagnosis for my symptoms severe cognitive impairment, frequent muscle and joint pain, recurrent swollen and tender lymph nodes, disturbed sleep, dizziness on standing, and lack of stamina when performing mental or physical tasks. Whenever I would exert myself at some task beyond a certain level, I would need several days of rest before being able to resume my normal level of activity.

    I was a licensed structural engineer in charge of the structural design of large buildings. After one week of a flu-like illness in October 1996, I returned to my job and was no longer able to make any sense of my work. I have never been able to work full-time again. I was unable to pursue my career after nine years of university education and many years of experience. I wasnt able to take part in many of the activities that I enjoyed. None of the treatments I was offered had any lasting benefit. Several doctors encouraged me to exercise. I had been an amateur marathoner so I resumed my running.

    Unlike before my illness, I experienced no training effect. Formerly, every spring after a winter layoff and some de-conditioning, I was used to experiencing several uncomfortable weeks before running became enjoyable again. I would gradually increased my usual run before work to six miles and my weekend run to ten miles. By the end of summer, I gradually increased my weekend run to over 20 miles in preparation for the fall marathon. After my illness in 1996, none of this applied. Running never became enjoyable. After jogging a mile one day, it was several more days before I could attempt to run again, and then it was like starting from scratch. So, I started walking. Any attempt to increase my walking distance resulted in days of incapacity.

    In the fall of 2004, my symptoms started to become more severe. I was suddenly unable to read, which was one of my greatest pleasures, and could write only with great difficulty. Any exertion put me in bed for days. I read about something called chronic fatigue syndrome and sought help from a doctor, who claimed to have a special interest in CFS, at a downtown university medical center. I was greeted with contempt and disbelief when I presented my symptoms to this doctor. I was barely able to stand, and he told me to get some exercise. In January 2006, ten years after my illness began, I finally found an integrative physician in Chicago who recognized my symptoms and diagnosed me with CFS.

    I was initially relieved to be diagnosed with CFS. I naively thought I was finally going to get some real help. I soon learned that the majority of the medical community regards CFS as a wastebasket diagnosis and no effective treatment is available. I told my dentist, when I was having difficulty getting up from her chair, that I had chronic fatigue syndrome. She replied, You should take some Geritol. Now, if someone needs to know about my illness, I say its a form of MS or a neuro-immune disease. Most people in Chicago, in my experience, still have never heard of CFS, and if they have, they think it doesnt really exist or its some kind of mental disorder. This, unfortunately, is true even with friends and family.

    I have yet to find a doctor in Chicago who understands the seriousness of ME/CFS and treats it accordingly. I am physically unable to travel to the handful of doctors in the US who are experienced in treating ME/CFS. If I were, I could not afford the financial costs.

    I believe the failure of most doctors to recognize ME/CFS and strongly warn patients against over-exertion stems from the CDCs flawed case definition of CFS. The most commonly used case definition is the 1994 Fukuda (Fukuda, 1994) Unexplained persistent or relapsing chronic fatigue is required and any four of the following eight symptoms.

    substantial impairment in short-term memory or concentration
    sore throat
    tender lymph nodes
    muscle pain
    multi-joint pain without swelling or redness
    headaches of a new type, pattern, or severity
    unrefreshing sleep
    post-exertional malaise lasting more than 24 hours

    Note that post-exertional malaise is not a requirement, if four of the other seven symptoms are present in addition to chronic fatigue. Post-exertional malaise is required for a ME/CFS diagnosis using the Canadian criteria. Post-exertional malaise, or exacerbation of symptoms, is the defining feature of the disease. How can the CDC still not make PEM a requirement in its case definition?

    Chronic fatigue and two of the eight symptoms, concentration impairment and sleep disturbance, overlap with the symptoms required by DSM-IV for a diagnosis of Major Depressive Disorder. Therefore, some patients with only Major Depressive Disorder with muscle and joint pain would meet the Fukuda criteria for CFS. The CDCs definition of CFS lacks specificity patients with more appropriate diagnoses are included, as are patients with idiopathic chronic fatigue and somatic complaints. How is a doctor to make a differential diagnosis with only guidance from the CDC?

    In 2005, the CDC attempted to operationalize the flawed Fukuda case definition for research (Reeves, 2005). This was the so-called empirical definition. A study has shown that the empirical definition allowed 38% of those with Major Depressive Disorders to be classified as having CFS (Jason, 2008). This definition produced a 10-fold increase in prevalence rates for CFS (Reyes, 2004; Reeves, 2007). With such a stunning increase, it is difficult to believe this attempt was made in good faith. One has to wonder just what it is that the CDC has been studying for over 20 years.

    Case definitions are vitally important in research. The empirical definition was used in a 2009 study (Heim, 2009) allegedly linking childhood abuse and CFS. What validity can such a study have when most of the subjects didnt even meet the Fukuda criteria for CFS? Yet, the CDC features the Heim study on its Chronic Fatigue Syndrome web page (http://www.cdc.gov/cfs/) as if it were a meaningful piece of research.

    Researchers outside of the CDC are now beginning to use the Canadian criteria in selecting a research cohort. Any subject meeting the Canadian criteria will also meet Fukuda. However, subjects experiencing only common fatigue and somatic symptoms are more likely to be excluded if the Canadian criteria is used. The Whittemore Peterson Institute, where the study finding an association between the human retrovirus XMRV and ME/CFS (Lombardi, 2009) was done, uses the Canadian criteria. The CFIDS Association of America in its promising BioBank research program uses the Canadian criteria. The CDC should follow their lead.

    The lack of specificity in defining CFS has allowed psychiatrists in the UK, with no special expertise in neuro-immune diseases, to claim their anachronistic theories of CFS are supported by science. A research cohort can be deliberately selected in which very few subjects actually have any physical disease. A study on this cohort then finds CFS has psychosocial causes and that behavioral treatments are appropriate. The lack of a rigorous case definition by the CDC, which has a worldwide influence, makes this possible.

    The most common behavioral treatment offered is graded exercise therapy (GET), usually combined with a form of cognitive behavioral therapy (CBT) that encourages patients to overcome their illness beliefs. If CBT/GET were a drug, it would not be found to be safe or effective for ME/CFS by the FDA. Yet, the CDC links on its website a paternalistic GET pamphlet by St. Bartholomews Hospital, London which states,

    "You may be worried that any increase in exercise or physical activity could make your condition
    worse. Be reassured - research has shown that a guided, gradual exercise programme can
    help people who suffer from CFS/ME without causing ill effects."

    The research referred to would not meet CDC standards so why should the CDC legitimize it? CBT/GET, in fact, has great potential for harming ME/CFS patients. The risks involved simply do not justify anyone recommending it for ME/CFS. The necessary activities of daily life are already more than many patients can safely handle. I believe if I had been properly diagnosed with ME/CFS in 1996 and warned against the possibility of causing serious damage by continuing to exercise, I would not be as severely disabled today.

    I hope under new leadership the CDCs CFS program will begin to correct the tragic mistakes of its past. There needs to be a reemphasis on the pathogenic theory of disease and alterations in the immune system. The CDC should carefully review the information on its Chronic Fatigue Syndrome website. Research using the empirical definition should be removed or clearly marked that the empirical definition was used. Links to the inappropriate UK NICE guidelines should be removed. Patients and doctors should be warned not only to avoid the push-crash cycle but that over-exertion of any type, including graded exercise, runs the risk of causing serious harm.

    I believe current XMRV research holds great promise. I would like to see a dramatic increase in ME/CFS research funding. I hope that the CDC can be a part of that future.


    References

    Carruthers B, et al: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols. Journal of Chronic Fatigue Syndrome 2003, 11:7-115.

    Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG, Komaroff A. The chronic fatigue syndrome; a comprehensive approach to its definition and study. Ann Int Med 1994, 121:953-959.

    Heim C, Nater UM, Maloney E, Boneva R, Jones JF, Reeves WC: Childhood trauma and risk for chronic fatigue syndrome: Association with neuroendocrine dysfunction. 
Archives of General Psychiatry 2009; Vol. 66 (1): 72-80.

    Jason, LA, Najar N, Porter N, Reh C. Evaluating the Centers for Disease Control's empirical chronic fatigue syndrome case definition. Journal of Disability Policy Studies
    2008, doi:10.1177/1044207308325995.

    Lombardi VC, Ruscetti FW, Das Gupta J, et al.: Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome. Science 2009, 326:585589.22.

    Reeves WC, Wagner D, Nisenbaum R, Jones JF, Gurbaxani B, Solomon L, Papanicolaou DA, Unger ER, Vernon SD, Heim C. Chronic fatigue syndrome a clinically empirical approach to its definition and study. BMC Med. 2005 Dec 15;3:19.

    Reeves WC, Jones JF, Maloney E, Heim C, Hoaglin DC, Boneva RS, Morrissey M, Devlin R. Prevalence of chronic fatigue syndrome in metropolitan, urban, and rural Georgia. Popul Health Metr. 2007 Jun 8;5:5.

    Reyes M, Nisenbaum R, Hoaglin DC, Unger ER, Emmons C, Randall B, Stewart JA, Abbey S, Jones JF, Gantz N, Minden S, Reeves WC: Prevalence and incidence of
    chronic fatigue syndrome in Wichita, Kansas. Arch Int Med 2003, 163:1530-1536.
     
  17. jspotila

    jspotila Senior Member

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    It will be a doozy

    The agenda for the CFSAC meeting has been posted: http://www.hhs.gov/advcomcfs/meetings/agendas/cfsac20100510_agenda.html

    A few very very interesting things:

    • The Assistant Secretary of Health, Dr. Koh, is scheduled to give a welcome message
    • Dr. Elizabeth Unger (temporary head of the CDC's CFS research program) has 30 minutes
    • Dr. Jerry Holmberg has 30 minutes for a blood safety update on XMRV
    • 90 minutes is schedule for review/update of past CFSAC recommendations
    • Only 30 minutes of public comment on the CFSAC charter :Retro mad:
    • Two hours of committee discussion on CFSAC charter and by-laws
     
  18. shrewsbury

    shrewsbury member

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    Here's the agenda in full:

    Chronic Fatigue Syndrome Advisory Committee
    US Department of Health and Human Services

    http://www.hhs.gov/advcomcfs/meetings/agendas/cfsac20100510_agenda.html


    Agenda -- CFSAC Spring 2010 Meeting
    May 10, 2010

    9:00 am: Call to Order, Opening Remarks, Roll Call, Housekeeping
    Dr. Christopher Snell, Chair, CFSAC and Dr. Wanda Jones, Designated
    Federal Official, Principal Deputy Assistant Secretary for Health

    9:15 am: Welcome Statement from the Assistant Secretary for Health
    New Members Statement on CFSAC Interests/Goals
    Dr. Howard K. Koh, Assistant Secretary for Health

    Introduction of New CFSAC Members

    10:00 am: Remarks from Dr. Elizabeth Unger, CDC, Acting chief, Chronic
    Viral Diseases Branch

    10:30 am: Blood Safety Update on XMRV
    Dr. Jerry Holmberg, DHHS, Office of Public Health and Safety

    11:00 am: Review/Update of past CFSAC recommendations
    Committee Members

    12:30 pm: Subcommittee Lunch

    1:30 pm: Public Comment on CFSAC charter

    2:00 pm: Review and Discussion of CFSAC Charter and ByLaws
    Committee Members

    4:00 pm: Adjourn
     
  19. jspotila

    jspotila Senior Member

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    CFIDS Association CFSAC testimony

    Kim McCleary submitted written testimony to the CFSAC on behalf of the CFIDS Association. The full five pages will be posted on the Association's website and I'll share the link once it's up. Ms. McCleary has received a three minute slot for public comment, and will give an abbreviated version of the written testimony. ETA the link: http://www.cfids.org/advocacy/cfsac-testimony042610.pdf

    Here are highlights of the Association's recommendations on the CFSAC charter:

    Regarding ex officio members, the Association recommends a number of changes in terms of adding new members and requiring representation from higher up in the agencies. Specifically, the Association recommends adding representation from the AHRQ and the Centers for Medicare and Medicaid Services.

    The Association recommends changing who is appointed from the other offices already represented under the current charter, moving higher up in the food chain. For example, the current NIH representative is the Associate Director for Special Projects and Centers at the Office of Research on Women’s Health. The Association recommends that the representative be the Deputy Director, Division of Program Coordination, Planning, and Strategic Initiatives (DPCPSI), Office of the Director. The alternate would be the Director, Office of Research on Women’s Health.

    The Association also recommends adding liaison representatives from the Department of Defense, Department of Education, Department of Labor, and Department of Veterans Affairs.

     
  20. Hope123

    Hope123 Senior Member

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    Thanks to everyone who sent in a letter yesterday! I sent mine in as well, mostly with comments about the charter as directed.

    (For all those who missed this time, mark your calendars for October 1 and begin composing your letter then for the Fall CFS meeting.)

    One of the items I asked them to consider is allowing committee members to work in between meetings as currently they are allowed only to discuss items DURING the meeting (hence the 2 hours of committee discussion per Jspotila's post) despite some members feeling that work would be more efficiently accomplished if more in-between time was allowed. I don't know how feasible this is given the constraints of government rules but asked them to consider it.

    Also, in regards to getting more funding, asking for more funding during CFSAC is good to get our requests into the public record but it sounds like who we really need to hit are the Congressional representatives who sit on appropriations committee. The prob with this is that many Congressional reps do not want to interfere with determining priorities in science, for good reasons in some cases. One point to consider is to keep pushing the progress that is being made in the science of CFS; I read a book once on how NIH funding is determined and part of what determines funding is timing -- e.g. there is so much potential in a certain area that it is ripe for better funding. Also, that discoveries made in one area will affect many areas -- e.g. connections between CFS/ XMRV and other illnesses.
     

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